Maybe we could find a computer person to volunteer to set up the videos on their site and attach a donate button to each video. Don't know if it's possible to do one that travels with the video when people post it on other sites, but would imagine it is.

Maybe I'll try corresponding with them again after the conference and run this idea by them.

Click to expand...

YouTube has just started a pay-per-view video system, but so far it's just in the USA. Their site says "We look forward to expanding the scope of this offering in the future."http://www.google.com/support/youtube/bin/answer.py?hl=en&answer=178329
It still might be a way to do some fund-raising for IinME, by setting it up in the US. That's a fairly large patient community.

YouTube has just started a pay-per-view video system, but so far it's just in the USA. Their site says "We look forward to expanding the scope of this offering in the future."http://www.google.com/support/youtube/bin/answer.py?hl=en&answer=178329
It still might be a way to do some fund-raising for IinME, by setting it up in the US. That's a fairly large patient community.

Click to expand...

I think that if they can get the tech help, they could raise a lot more money this way than by selling DVDs and could reach a lot more patients. Win-win if they can do it. Can anyone help them? Wish I didn't have the technological ability of frogspawn. :ashamed:

A sort of big thing from the conference was Brigette Huber. She found no XMRV in 228 samples.

112 samples from Levine New York
105 from Taylor
11 from HHV6 Foundation

All negative. No idea about controls, I don't think she mentioned them. Again she mentioned contamination. However, I don't think she used the same method as Science paper. Mikovits again said they checked contamination, and there was none. This is still to be published I think

So this must be the negative paper. Also Klimas is still positive about XMRV, and so am I.

Among all retroviruses analyzed, XMRV has the strongest preference for transcription start sites, CpG islands, DNase-hypersensitive sites, and gene-dense regions; all are features frequently associated with structurally open transcription regulatory regions of a chromosome.

''It is also possible that XMRV may be able to induce transcription of an endogenous virus according to Brigette Huber,a professor of pathology at Tufts University’s Sackler School of Graduate Biomedical Sciences in Boston.She has been studying the presence of an ancient retrovirus,HERV-K18,which is dormant in most people but active in patients with CFS and multiple sclerosis.(29)Epstein Barr virus has already demonstarted that it can do this.(29,30)''

Dr Chia said 52% respond to oxymatrine - if they don't respond after three months then they're probably not going to.

Dr Kerr talked about using SNPs to predict subtypes. He had a diagram showing the 8 sybtypes in loose clusters, you could see they were separated.

Dr Klimas said the cytokines were not networking together well in CFS. She had an experiment which involved sticking patients on a bike, and taking their blood at intervals, so that she could see where things started to go wrong first, with the idea of treating those problems, as opposed to treating whichever problems came later on. I think it was all the immune things that started to go wrong first, but I'm not sure of that.

Huber also mention her HERV-K18 work. Early days but it looks like EBV or HHV6 is able to turn on HERV-K18, resulting in massive T cell activation. Symptom severity looks to be matching level of expression. Still early days on this.

Hope I got this right. I'm sure some of this has been mentioned before.

judy brushed it off in her talk, without naming names. nancy laughed about negative studies, saying they make life more interesting for them. said it took loooong time for HIV consensus, this all can be expected....

oh and btw that tufts study has been rejected for publication TWICE so far.

I have just been sent a brief message from a friend who attended the conference, who said that in Professor Huber's talk about a retrovirus as a marker for ME, she stated that her study was negative for XMRV and that the reagents proved to have been contaminated.

I have no more information than this, and hestitated whether to post, but maybe someone else more information about Professor Huber's talk. Is this, perhaps, the negative study that Dr Nancy Klimas mentioned?